Friday, April 29, 2016

Honest

"Bring your brokenness, and I'll bring mine
'Cause love can heal what hurt divides
And mercy's waiting on the other side
If we're honest
If we're honest" 
~Francesca Batistelli "If We're Honest"

This song has been pretty popular on the radio station I regularly listen to, and it touched a chord for me today.

Because, if I'm honest, this week has been a rough one.

Trigger after trigger as we are faced with tests that I know in the deepest recesses of my mind are just being done out of an abundance of caution.  And hold absolutely no risk of turning into a reality.

But yet, hold a huge amount of power over my mind.  And my heart.  Three little words I thought we'd never hear since we avoided them so easily in the beginning.  Three words that strike at the very core of a preemie mom's psyche.

Failure to thrive.



If we're honest....

You will never be the same after a premature birth.  


If we're honest....

It will change your life.


If we're honest...

You'll be watching a miracle grow.  Every day.






If we're honest...

You learn the value of a day.  An hour.  A minute.


If we're honest...

You learn not to take that time for granted.



If we're honest...



"I'm a mess and so are you
We've built walls nobody can get through
Yeah, it may be hard, but the best thing we could ever do, ever do

Bring your brokenness, and I'll bring mine
'Cause love can heal what hurt divides
And mercy's waiting on the other side
If we're honest
If we're honest" 
~Francesca Batistelli "If We're Honest"


Thursday, January 21, 2016

5 Months!

Wow.  I can't believe it's actually been 5 months since you entered our world.  It seems like just yesterday I randomly peed on a stick on the evening of day 28 on a whim.  (Which was just silly, since I didn't have 28 day cycles.  More like 50 day!)  You probably can't even fathom the amount of shock I had when I saw that second line show up.  Faint, but clear as day.  That was a little over a year ago now.  Not like it was unexpected, but I certainly didn't expect it then!

Now, 5 months in, I can't imagine life without you.  You are the perfect ending to our baby days.



You've completed our family and I couldn't imagine it any other way.

You've decided that standing is the only way to go.  I see your mind spinning behind your eyes as you take in everything your big brother and sister do and I can't help but thinking you can't wait to join them in their antics.  I only hope that as you all grow older, they will allow you to join in even with the age difference.

Your laugh is contagious and you give it freely to us.  Something as simple as your big brother getting face to face with you is enough to light up your eyes and spill that glorious sound.  I love, also, how your face is just so full of lines when you smile.  And those dimples.

You also seem to have decided that rolling over is just not something you like.  While you can go both ways, you just want to be on the go.  You can't wait to figure it out.  You are insisting on standing, never mind sitting. 


Napping and sleep, however, are not your strong suits.  You must be so afraid to miss something.  I can understand that during the day...but not at night.  Your momma would really appreciate if you could go back to just one a night wake ups. 

You are growing at your own rate, and I'm trying to let that go.  I don't know why the whole weight thing just hangs on like an unwelcome guest.  You are 12 lb 8 oz and seem to put on a pound a month.








Love you, baby girl.

Monday, January 4, 2016

Apparently...

I never introduced the newest member of our family.

So here we go.  Better late than never?


Avery Elizabeth entered our world on August 21, 2015 at 37 weeks on the dot and 7lb 8oz, 19.5 inches.  I fought hard for her and struggled through intense pain, fought through contractions and extreme exhaustion those last few days to make that goal.  I would have gone further had I been given the choice.


She did NOT come into this world screaming her dismay.  Really, she wasn't quite ready to be here.


We arrived at the hospital at 8 for the scheduled section at 10 am.  Never having made it to a scheduled delivery, I didn't quite know what to expect.  It felt so sterile, unemotional.  I think I was detached and had an odd fear over it.  As much pain as I had been in the last few weeks before her delivery, I still wasn't ready for this day.

They explained that they would take me back to the OR alone to start the the epidural and process to begin the surgery and once they started they would bring Andrew back.  It seemed like it took forever but I was finally laying on the OR table and able to feel nothing but tugging on my belly.  As they were laying me down, I started crying with the overwhelming fear, especially since they still had not brought Andrew back yet.  Which turned to outright panic when I could feel them starting to cut and he was still not in the room.  Was he going to miss this birth too?!  Where was he?  I'll never know the delay but I kept asking the nurse where he was and they kept saying he was coming.  He finally showed up and didn't miss a thing.  That was important, anyway.  And then we were off.

I remember them showing me to her real quick and whisking her off to the neonatologist...and Andrew standing at my arm and looking hesitantly over at them.  I remember them telling him he could come over...and I remember the neo asking someone to call her respiratory therapist.  And I'm just going oh geez.

Luckily by the time the RT got there, she had begun breathing appropriately for her age.   That should have been my first clue.  We were wheeled to recovery where the nurses worked with me to get her to nurse, but she was very lethargic and floppy.  I don't know where my mind was.  Denial?  But I didn't see it.  Andrew did and kept voicing his concerns but they kept saying it was ok and normal.  Once we were wheeled to the mother/baby floor he finally got someone's attention enough to take a harder look at her and they brought her right down to the nursery.

She was shoved full of formula.  So much so she threw most of it back up.  Her blood sugar was critically low.  Formula would get it up momentarily but then it would plummet again.

And so began a back and forth between the nursery, and pre-admission to the NICU for several days for IV sucrose.


I don't know that there are any words to describe my emotions over these few days.  Knocked on my ass but not staying there.  Squaring up the shoulders and once again getting up and putting one foot in front of the other.  Anger.  That I was once again in that place.

Eventually, the fight to control her blood sugar and an inability to transfer enough milk when nursing due to a lip and tongue tie (diagnosed later) caused her to officially be admitted to the NICU.  Officially locked away and in "jail" as I described it lol.  The fight took so much out of her that she began to be unable to control her body temperature and ultimately stop eating.  And forced the issue of an NG tube.  Each item added another complex goal to meet to start the slow, upward climb to home.


Thank God, and I truly can only credit Him, this NICU had rooms for families who were "rooming" in with their babies and another "Julie" of a NICU nurse.  Even though these rooms were only meant for families who were preparing to bring their baby home the next day, the nurse arranged that I be given one of these highly sought after rooms due to my desire to nurse.  And probably also took pity on my state of mind as it quickly unraveled when they started to push the NG tube on me.  And I irrationally asked them if she was going to die since she kept going backwards in her ability to function outside my womb.  My saving grace for this stay was that I did not leave that hospital until she did, 10 days after she was born.



It was a rather awkward place to be in.  She wasn't "pre-term" like Elisa and many of her cell mates, and yet had many of the milestones to meet that she did to go home.  And yet, she wasn't able to go home.  My heart ached for the other moms there, having been in their shoes but feeling distanced from them since she was so old.  This stay didn't have the same repercussions.  There weren't developmental delays to worry about.  There wasn't a compromised immune system.  This was just a blip on the radar.

Since then, she has continued to grow and develop and exceed expectations.  Her weight has been slow to move forward, and she was even given that dreaded "failure to thrive" label.  That is a joke.  But even with this, she is a happy, healthy, amazing 4 month old and the perfect closure to our family.

1 Month
8lbs 3 oz, 21 inches


2 Months
9lbs 12 oz, 22.75 inches


3 Months
10lb 13 oz


4 Months
11lb 9 oz, 24 inches

I love her in so many ways.  I bonded the fastest with her out of all of them.  And despite her NICU stay, she has "healed" me.  She's been my only successfully breastfed baby.  And baby she will always be.

I look forward to watching her grow up.

But not too fast.


Wednesday, November 18, 2015

A bit sad...

I started this blog way back in 2007 as a way to document our lives and as virtual baby books once we were blessed with those children.

I started learning photography in 2012 in order to have a better visual representation of our lives.

But somehow, along the way, life has gotten in the way of that.  And I seem to have completely abandoned that idea and moved to the idea of one-liner status updates on Facebook.  As I went back the other day to find some historical information on one of my kids, and couldn't find it on here, I was disappointed.  In myself.  For completely, seemingly going dark.

For all the moments and thoughts that I missed with Avery's pregnancy.  All those moments I missed documenting.  I have no real excuse, just the simple fact that I am overwhelmed with life and a lot of my creativity is sucked out in work projects.  I can't even blame photography any more, as once I got to a certain point in the pregnancy with Avery, I simply didn't have the energy or brain power to do that.

I miss capturing our life in words and images.  I don't know how to add that back into my life on a regular basis.  I only have so many hours in a day.  So, I guess, here's a little quick and dirty update.

E:

6 years old and in her first year of kindergarten.  Yes.  6.  And in kindergarten.


There were so many days over the years that I feared what this time would hold.  Would prematurity rear it's head again?  It was a bit of a rough beginning as she adjusted to the new schedule.  We had quite the attitude once she got home from school, but we think a large part of that was the unexpected drama surrounding her sister's birth and the fact that mommy wasn't home for 10 days.  But so far she has excelled, especially in math and science to her father's excitement.  Those who know me well, know math is not my strong suit.  :-D



And much to her father's and I surprise and pride, she has even won a "classy cat" award for kindness for being the first one to offer help, support, caring and concern for her classmates.  The surprise only comes from the fact we wish she showed this spirit at home...with her brother...

Her recent checkup had her at 36lbs and 3 feet 6 inches tall.  She continues on her curve for her height, but is dropping (again) on her weight.  For the 2nd year in a row she has dropped further down.  From her top of 11%, down to 9% at 5 years and now down to 4%.  Somehow, we have to get this kid to eat more.  In addition, speech has AGAIN become a concern.  She has consistently tested behind, but not significantly, since her release from early intervention.  She was recently re-tested by the school and from what it sounds, she will be starting speech services again.  The 1-2 punch for the preemie mom guilt...but I'm choosing to simply stick my tongue back at it and say "nah-nah."

Mature.  I know.


And then...

We have this one.



A:

From the day he was born, he has confounded us.  From colic, to climbing.  Now jumping and outright defiance.  And serious doses of independence.  After years of struggling to get the boy to potty train, he decided the best place to do so was at the very start of his first airplane ride.  Yes.  The boy potty trained on a plane.  Whatever works?  He has recently taken to dressing himself and we love it...just often find ourselves amused as he insists on putting his clothes on backwards and the wrong feet in the wrong shoe.  But hey.  At least he dressed himself. :-D



Luckily, mommy and baby sister returned home from the NICU the DAY before he went for his first day of preschool.  It seems to have been a non-issue in terms of adjustment for him and he is loving it.  His teachers have told us many times just how smart he is and how he is telling them of things they have not taught yet.  If only we could get the jumping under control....I don't know how the kid hasn't ended up in the hospital yet.

He is 3, almost 4 and outweighs his sister.  Not entirely surprising...  He loves "power engine turtles" (translation: Teenage Mutant Ninja Turtles), Optimus Prime and most recently...Power Rangers.  Sigh.  Side note...did anyone else notice Jennifer Garner was one of the Power Rangers?!



Last...but not least...the littlest A



Though her entrance to this world was far less than what was dreamed, she has been a dream baby.  Like her older sister, she has slept through the night from early on.  But also like her older sister, she is a peanut and on the slow side of the weight gain.  She's persevered through her own NICU stay, tongue and lip ties and corrections.  She's almost 3 months old and weighs 10lb 13oz.  Seems she is going to be a tall peanut.  She's finally started giving us full fledged smiles and even shown a mischievous side.  But most of her awake time is spent looking around and acting unimpressed by the shenanigans of her older siblings.


The older two absolutely adore her and E has decided being a big sister is a cool thing, instead of a drag.  She begs to help out sometimes and I feel so bad that I have to tell her no a lot.  Since she mostly wants to help feed her.  And, well, I can't let her do that or it's to my detriment haha.



Life is insanely busy - but overall satisfying.  I truly hope to be able to go back to capturing those little moments, especially as we are walking down the path of our absolute last baby.  These are the things we want to remember when we are old.

Saturday, August 29, 2015

PTSD

What is PTSD?





PTSD, or Post Traumatic Stress Disorder.

It's not always about war and the trauma that puts on our service men and women, which is what it is most commonly known for.  And while I am in no way saying their struggle is not important and shouldn't be getting the awareness that it does (because it deserves every bit of awareness and more) but there is more than one type of PTSD.




Sometimes PTSD reflects itself in more subtle ways.  The cacophony of beeps, cries and burps.  The sites of tubes down noses, wires, thermometers.  The measuring of bottles, diapers, weight.  The sights, the sounds, the smells.  Oh so familiar, in some ways comforting and in other ways gut wrenching.

PTSD is watching your youngest daughter walk the same path as your oldest, albeit to a much smaller degree.

PTSD is walking down those same, yet very different halls.  Knowing what you will find, you've been there before.  Hiding your tears and holding your head high.  And yet afraid of being sucked in again.






Sucked in by a need to know quantity in such a way that it consumes you.  Did she eat enough?  Is she warm enough?  Is she gaining weight? 

Eat, eat, eat.  Gain, gain, gain.

Can we not just go home?




Wednesday, July 1, 2015

Hanging by a Thread

Yesterday, I posted an article on my Facebook page about kindergarten applications requiring certain information upon registering their child for school.  One of which was a question about whether the child was vaginal or a c-section birth.  But others pertained to whether or not the child was premature, if the pregnancy was complicated (HA!  They need more than three lines of space for me), how premature, if the baby came home with you, etc.



http://www.kctv5.com/story/29435236/mom-concerned-about-question-on-west-hartford-school-forms

This post resulted in a lot of very HEALTHY conversations regarding this and my desire to not put in any of my daughters public records the circumstances of her birth.  (And please know, that those of you who will read this and participated in that conversation, you in NO WAY offended, hurt, disrespected me, etc and I appreciated each and every ones participation as it did give alternate points of view.)

But I realized this morning why it triggered such a negative response in me.  Because of the filter I viewed it through.

Which filter was that?  The one of mommy guilt.  The one that by having to mark that box yes screams to the world the scarlet letter on MY back that I failed her.  I failed her in so many ways. That there are problems that may still arise from my inability to keep her in.

And I just find myself asking WHEN.  When will we be past all of these potential pitfalls that may come her way?  When will I be able to stop worrying that I damaged her?  When can I lay down this scarlet letter?

Granted, I will never stop sharing her story as she is truly a miracle to me.  Such a happy, healthy, vibrant, intelligent miracle.  Who has shown me more strength in one tiny body than I thought was possible.  I am so proud of her and how well she has done.

But when can I stop looking ahead to try to stay on top of any potential problems as a result of circumstances she certainly didn't cause?

When can I just enjoy her for her and the miracle that she is?

When can I stop feeling like I need to defend myself from having to explain to the world why my body decided to prematurely eject the child from my womb despite every effort to keep her in?

Sunday, June 28, 2015

The power in a day

Ask any preemie mom and they will tell you that just one day can make a huge difference.  The difference between life or death.  The difference between the medical community fighting for your child or not.  The difference in the length of a NICU stay.  The difference in the long term outcome of that child.

We wear those days on our shirts like a badge of honor.  Even subsequent pregnancies is not just a birth day - but a gestational age. 


Elisa was 29 weeks 1 day when she was born.  Aidan was 37 weeks.

That 1 day is important.  Because it was one day longer I held on and kept her in.  It's almost for me a sign of just how much more I tried to kick prematurity (and pre term labors) butt.


I shot this yesterday at 29+1.  To celebrate this victory.  I don't need artists renditions of what this one looks like at this point in her development.

I watched it in person.






But every day now is a victory.  A victory against prematurity.  A victory that I've made it this far.  I can't say it's the longest I've ever been pregnant.  But it's the longest I've gone without symptoms of pre-term labor (we won't count Wednesday's episode of contractions every 2-3 min since I was already in the hospital for a headache ;) - but even then, at 28+5, that was the longest I'd made it in either before having to go to L&D).

I watched her grow from this point on until now.  Showing prematurity that it's just a word, not a definition.